There was a time I didn’t want to read one word about bodies or medicine, but maybe because of developing chronic health issues myself, or again living in the US uninsured, but as I mentioned in my first Nonfiction November post, I’ve been drawn to medical-related nonfiction lately.
Here are three targeted at lay readers that are educations in and of themselves.
I’m not sure how much of Bill Bryson‘s The Body: A Guide for Occupants (October 2019, Doubleday) would be revelatory to anyone in the medical profession, but to a lay reader this was easily one of the most fascinatingly informative books I’ve read in recent memory. Bryson’s general appeal is somewhat mysterious to me; I’ve found his other books to be too much folksy, aw-shucks dad-joke humor. So I was pleasantly surprised at how different the tone was here.
He uses some wry humor but it never felt forced, and the writing was completely accessible considering how much information he packs in. It’s information that stays with you; I think I’ve been quoting factoids from it constantly. (A favorite: we have some kind of internal timekeeper, it’s why you often wake up right before your alarm. But we don’t know what it is or how it works!)
Bryson moves through systems of the body, highlighting juicy bits of history and how they apply to our current understanding. Even things I already basically knew, like that Austrian medical instructor Ignaz Semmelweis was first to recognize the importance of hand hygiene, were expanded here beautifully. I didn’t know, however, that in 1847 no one wanted to hear it, and before revolutionizing medicine he lost his job and his mind, was institutionalized and murdered by asylum guards.
Perhaps my biggest takeaway: we know so little about the human body. Shockingly little. Even the most basic — like we’re not entirely sure why we need to sleep, as critical as that process is. We don’t know why sinuses are often problematic, or why they take up so much space in our heads. However bad you thought sitting for long periods was, it’s worse. Coffee doesn’t actually dehydrate you. Your liver doesn’t know the difference between sugar from fruit or from soda. Just a few of my revelations here.
In addition to the many dead-ends in medicine, the other big factor was Bryson’s constant wonder at incredible our bodies are. That’s a message I feel like we’ve been getting since seventh grade health class videos, but this drove it home powerfully. Consider his interview of a researcher working on “a system that keeps the hemoglobin inside a polymer shell.”
“At the time I met him, he believed they were three years away from trials in humans, and perhaps ten years from using it clinically.
In the meantime, it remains a slightly humbling reflection that about a million times per second our bodies do something that all the science of the world put together so far cannot do at all.”
James Hamblin is an MD who turned to journalism, and writes accessibly for general readers about health topics at The Atlantic. He reminds me of a “science translator,” breaking down complex information for readers without medical backgrounds.
This is something Ben Goldacre has encouraged medical professionals to do, because as Hamblin notes we have so much information google-able at our fingertips that it’s hard to know what to make of it all. Science is dense for non-scientists, which is probably why people tend to listen to Gwyneth Paltrow instead.
Hamblin isn’t trying to sell anything, which is an important distinction to make between his books and certain others written by doctors, I feel. Rather, he explains concepts that are easily misconstrued. In that, If Our Bodies Could Talk is crucial for making medical information understandable for the average reader.
The tone is chatty, sometimes very funny — when explaining that blue-eyed women were once burned as witches (!) he notes that of course we now recognize witches can have any color eyes. He comes across as personable and having loved Clean: The New Science of Skin, I want to read everything he writes.
Hamblin uses the categories “Appearing,” “Perceiving,” “Eating,” “Drinking,” “Relating,” and “Enduring” to answer commonly asked questions or address misperceptions around how the body works. Some are silly, like whether a lost contact lens can end up in your brain. Plenty I’d learned from reading The Body first — namely, the supplement industry is an unregulated disaster, the science around melatonin is hazy and hasn’t been studied long-term, and misunderstandings around antibiotics from Biography of Resistance.
But he chooses some fascinating topics, particularly to explain ethical issues, like advertising by hospitals, which is a weird concept to consider. He uses the example of NYU Langone and increasing labia surgery. Langone spent $22 million on advertising in 2014, “leading the country in a surge of direct-to-consumer advertising by major medical centers. The practice, once taboo in the profession, a sign of quackery, is now commonplace and rapidly increasing.” As a journalist, he emphasizes that that advertising money targets him too, citing a press release from a publicist hired by NYU “to spread the word about labiaplasties” with the goal of at least “plant[ing] a seed in the public mind.” I was speechless.
Later, writing about an expensive heart procedure that may not even be necessary, he writes that “the most expensive health care system in the world (the United States’) …has every financial incentive to keep us alive, but little or no financial incentive to keep us well.”
He does go on a few tangents on subjects that surprised me for their intensity and felt less informative or generally relevant. But sometimes the segues were incredible, like a story about Mr. Rogers and a little girl getting an unusual brain operation (courtesy of Ben Carson) that had me ugly crying as I read it. (Side note: is there anyone on earth as wonderful as Mr. Rogers? I want to read The Good Neighbor but I’m afraid it’ll be endless ugly crying.)
In an anecdote about oral syphilis being confused with oral thrush (fun!) he mentions that the patient “went on the still popular ‘anti-candida diet,’ which is one of the seductive disease-fighting diets peddled by the Internet at large, despite thorough scientific de-pantsing over the years…It’s like nutritional chemotherapy, pushing a person to the limits of hunger and joylessness, until the fungus dies but the person does not.”
Having been on this diet of joylessness myself with zero effect, it was nice to be able to laugh about it a bit. To keep from crying at the memory. But bad treatments for women’s health brings me to Maya Dusenbery‘s Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
This book is, ultimately, about how gender bias affects the care patients receive.
Dusenbery is interviewed in Clean, and having been through it with doctors misdiagnosing, mistreating, or just not giving a fuck about my illnesses for the last decade-plus, I couldn’t read this fast enough.
It’s a bit denser, data-heavy, and less chattily readable than the previous two but worth the concentration.
Dusenbery identifies a knowledge gap – quite simply, the “average doctor does not know as much about women’s bodies and the health problems that afflict them.” This begins with using male cells and male animals in preclinical studies and doesn’t improve from there.
The second factor is the trust gap: “women’s accounts of their symptoms are too often not believed,” hearkening to the old-timey “catchall diagnostic category of hysteria.”
It’s a lot of bad news, honestly. I knew this whole situation was bad, from my own experience and that of other women, but it’s worse. Dusenbery incorporates a host of interviews with women with health problems ranging from gender-specific ones to plenty that shouldn’t have any basis for misunderstanding or misdiagnosis due to sex, and yet. She also includes the amplification of difficulties around trans health issues, and the biases here were eye-opening and shocking.
“The medical community has viewed women’s health with a bikini approach, focusing essentially on the breast and reproductive system,” according to Dr. Nanette Wenger, a leading expert on women’s heart disease. Baffling to consider that even heart disease, the leading cause of death in the US and something at which we’ve thrown endless research time and dollars, encounters misdiagnoses and errors in women because they’re women.
Part of it is that “women’s symptoms are ‘all in their heads’ — until proven otherwise. This assumption has had incredibly long-lasting effects on what is known about women’s health and diseases and how women are treated when they enter the medical system.”
Doctors don’t get feedback about misdiagnoses because patients aren’t likely to return to someone who didn’t listen, dismissed them, or made them feel humiliated and accused of fabricating or exaggerating. Instead, they go to more doctors, for years on average, until finding one who makes the correct diagnosis. This is especially prevalent in women with autoimmune disease. “Once doctors have settled on one answer, they stop looking for another. But, in the worst-case scenario, the patient stops looking too.” Or she runs out of money for looking. Dusenbery reports one woman spent $400,000, went to 210 doctors including the Mayo Clinic, and only ever got a diagnosis of mental illness. She had ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
“There is no class of diseases that don’t usually kill you but can ruin your quality of life that is just as prevalent and is twice as common among men.” This was something that came up in The Lady’s Handbook for Her Mysterious Illness and I’ve been turning in my mind since. My own illnesses won’t kill me, they’re not cancer-related or life-threatening. And yet they’ve changed my quality of life — even the course of my life — completely. Sarah Ramey quotes a statistic in that book about chronic illness sufferers consistently reporting lower quality of life than cancer patients. It’s not to diminish cancer, but to emphasize what it feels like to be shrugged off and still symptomatic with no end in sight.
Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it’s worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but a whine.
Pain is real when you get other people to believe in it.
When an orthopedic surgeon was diagnosed with interstitial cystitis herself, formed the Interstitial Cystitis Association and discussed it on Good Morning America, she received donations from family members of IC sufferers who had committed suicide “to end the agony.” It underscores that these problems aren’t only frustrating, time-consuming, and expensive, they’re devastating and sometimes beyond our coping capacities.
The biggest problem is that there are so many problems. You can’t win for losing if you’re a sick woman, basically. Whatever your demographic and condition, doctors have a stereotype to fit you:
Women’s ‘doctor stories’ are similar, even when they are quite different. A white Ivy League college student is more likely to be seen as anxiety-ridden, while a woman of color is more likely to be stereotyped as a drug seeker. “Educated white women” are seen as health-obsessed hypochondriacs who need to get off WebMD. But less-educated women may be seen as malingerers looking for a disability check. A thin woman is told she can’t be seriously ill since she ‘looks so good!’ while a fat woman is told all her symptoms are due to her weight. For most of our lives, we are “too young” to be sick anyway, and our symptoms can be blamed on menstrual cramps, pregnancy, motherhood, and menopause. By the time we’re finally old enough to be seen as sick, we’re so old that nobody cares if we are.
As a step towards solutions, she emphasizes the importance of women’s advocacy, becoming a “more well-informed, educated health care consumer” and doing research yourself, even while acknowledging how fucked up it is that we’re “asking individual women to compensate for the medical system’s failures.”
It armed me with a lot of helpful information, as well as a feeling of support and solidarity often missing when grappling with health woes and feeling alone in your own personal medical horror story. Every woman and every medical professional should read it. (March 6, 2018 by HarperOne)
Any medical nonfiction for lay readers you can recommend?